To the person who mailed me regarding optometrists in the Milton Keynes area
Sorry I haven't replied and I hope you receive this message. Unfortunately our computer crashed last week and we lost everything on it since the previous back-up mid Nov. So if you mail me again I will reply as know some good people.
To everyone - Happy new year. I am now 2 years post the second graft in my left eye and all's ok. Sight wise am blind without lens correction and can't see as well oiut of the new graft as I did with the old one. But on a positive note I'm wearing sclerals for over 12 hours a day and love them so much that I now don't even bother with my rgp corneal lens for my right eye! My eyes look bigger in the sclerals and the whites are white and not the awful bloodshot loook that I had with my corneal lens!
The only prob I find is that if I'm very tired like now then my eyes seem to produce a lot of mucus and go red> Anyone else find this?
On the subject of salines etc Safeway own brand non-preserved is the same as Ciba non-preserved. Boots own brand products for cleaning and conditioning rgp lenses are exactly the same ingredients as both boston and baush and lomb (?spelling)
Carole
Quicktopic posts: Jan 2003
Moderators: Anne Klepacz, John Smith, Sweet
-
listener@umbilical.demon.
Carole said:
The only prob I find is that if I'm very tired like now then my eyes seem to produce a lot of mucus and go red> Anyone else
find this?
Yes, me too - if I'm tired, or getting a cold, or hungover (not
that I ever get hangovers, you understand....!) or jetlagged, or otherwise run down, my eyes get sore, red and tired. Actually,
they don't produce as much mucus as they used to do when I was a bit younger, but they certainly used to fill my lenses up with
yellowy goo whenever they got tired and sore.
Rosemary
--
Rosemary F. Johnson
The only prob I find is that if I'm very tired like now then my eyes seem to produce a lot of mucus and go red> Anyone else
find this?
Yes, me too - if I'm tired, or getting a cold, or hungover (not
that I ever get hangovers, you understand....!) or jetlagged, or otherwise run down, my eyes get sore, red and tired. Actually,
they don't produce as much mucus as they used to do when I was a bit younger, but they certainly used to fill my lenses up with
yellowy goo whenever they got tired and sore.
Rosemary
--
Rosemary F. Johnson
-
harpomatrix@yahoo.co.uk
Acute Hydrops Update:
> 7 weeks and 4 days now since I've had it
> no progress made until the last couple of weeks. A little clearer on the edges, can just about make out how many fingers on my hand if i place my hand above the right eye or to the far right.
>After 3 weeks of havin hyrdrops i was told no progress was made. They didn't seem hopeful that much would but nor did i. They told me to wait 5 weeks for another checkup. I knew that this was a long time away and that i needed to make some progress cause if i didn't then things would be very bad. didn't want to come back after 5 more weeks for them to say no change. It would of been too much to handle. But over the last 2 weeks i noticed there was a slight change so i thought least finally something was happening.
> Had my appointment today. I was deperately seeking some form of reassurance by the doc. She didn't seem like it was much of a deal and said that there was some improvement but it was a long process. See me in 6 Weeks!
> 6 weeks? its like they want to send me away for long periods of time and hope something gets better. its like "this is ur prob deal with it and come back later". I wished i could get one after 3 weeks or somethin. Maybe i want reassurance too much. So now in 6 weeks i am hopin for something further to happen a much more significant improvement.
> I mean its been like 7 weeks since i had hydrops. feels like forever. have to wait just as long for another appointment. Even then it probably won't be significantly better.
> I am in the middle of my uni exams right now. Developing hydrops over the last 2 months wasn't what i needed and put on a lot of emotional stress. Many have told me to apply for extenuating circumstances but i decided that i do not want to. Not sure why. Don't want to have examiners take pity on me or something i guess. I think i want to do it "on my own" i guess.
sorry for the long post just loads to get of my chest!
> 7 weeks and 4 days now since I've had it
> no progress made until the last couple of weeks. A little clearer on the edges, can just about make out how many fingers on my hand if i place my hand above the right eye or to the far right.
>After 3 weeks of havin hyrdrops i was told no progress was made. They didn't seem hopeful that much would but nor did i. They told me to wait 5 weeks for another checkup. I knew that this was a long time away and that i needed to make some progress cause if i didn't then things would be very bad. didn't want to come back after 5 more weeks for them to say no change. It would of been too much to handle. But over the last 2 weeks i noticed there was a slight change so i thought least finally something was happening.
> Had my appointment today. I was deperately seeking some form of reassurance by the doc. She didn't seem like it was much of a deal and said that there was some improvement but it was a long process. See me in 6 Weeks!
> 6 weeks? its like they want to send me away for long periods of time and hope something gets better. its like "this is ur prob deal with it and come back later". I wished i could get one after 3 weeks or somethin. Maybe i want reassurance too much. So now in 6 weeks i am hopin for something further to happen a much more significant improvement.
> I mean its been like 7 weeks since i had hydrops. feels like forever. have to wait just as long for another appointment. Even then it probably won't be significantly better.
> I am in the middle of my uni exams right now. Developing hydrops over the last 2 months wasn't what i needed and put on a lot of emotional stress. Many have told me to apply for extenuating circumstances but i decided that i do not want to. Not sure why. Don't want to have examiners take pity on me or something i guess. I think i want to do it "on my own" i guess.
sorry for the long post just loads to get of my chest!
-
Sue Ingram
Dear Abby (1296), Welcome to the KC Group Discussion Page. I would just like to put your mind at rest that once you have sorted out the right solution for you in order to correct your vision - which is usually contact lenses - you will find that you can should be able to carry on your life completely as normal. I have had KC for over 25 years and it has not stopped me doing anything, including scuba diving on the Great Barrier Reef whilst wearing rgp corneal lenses!
You should find that driving is not a problem as long as your vision comes up to the requirement for driving when you have your lenses in (although night driving is sometimes a bit tricky with the oncoming lights!).
With regard to computers, I think there are many of us who have to work with computers all day; the only thing is that you might find your eyes become dry, sore, red or itchy if you spend a long time at the pc whilst wearing contact lenses. Always best to make sure that you take regular breaks and don't stare at the pc screen for hours on end without resting your eyes. Ultimately, I do not think using a pc makes KC any worse or makes it progress any quicker; its just that it might aggravate the lens wear.
You will not go blind with KC - there are various different lenses that can correct your vision (please see KC Group Website on http://www.kerataconus-group.org.uk) and ultimately if you cannot wear lenses any more or your vision cannot be corrected with them, then you can have a corneal transplant. There are many people who have had successful corneal transplants - you will find lots of stories on this Discussion Page.
Do you live in the UK or Africa?? If you are in the UK you should be able to get contact lenses on the NHS which makes things an awful lot cheaper. In Africa - well, I don't know about that!
I am so glad you have found the website and that it has helped you. Please do not give up and let us know if you have any more questions or fears - there are many people here who can support you. Take care and keep smiling :-) SUE
P.S. Know exactly what you mean about not recognising people you know in the street because you cannot see them - one of the hazards of having KC, I believe!
You should find that driving is not a problem as long as your vision comes up to the requirement for driving when you have your lenses in (although night driving is sometimes a bit tricky with the oncoming lights!).
With regard to computers, I think there are many of us who have to work with computers all day; the only thing is that you might find your eyes become dry, sore, red or itchy if you spend a long time at the pc whilst wearing contact lenses. Always best to make sure that you take regular breaks and don't stare at the pc screen for hours on end without resting your eyes. Ultimately, I do not think using a pc makes KC any worse or makes it progress any quicker; its just that it might aggravate the lens wear.
You will not go blind with KC - there are various different lenses that can correct your vision (please see KC Group Website on http://www.kerataconus-group.org.uk) and ultimately if you cannot wear lenses any more or your vision cannot be corrected with them, then you can have a corneal transplant. There are many people who have had successful corneal transplants - you will find lots of stories on this Discussion Page.
Do you live in the UK or Africa?? If you are in the UK you should be able to get contact lenses on the NHS which makes things an awful lot cheaper. In Africa - well, I don't know about that!
I am so glad you have found the website and that it has helped you. Please do not give up and let us know if you have any more questions or fears - there are many people here who can support you. Take care and keep smiling :-) SUE
P.S. Know exactly what you mean about not recognising people you know in the street because you cannot see them - one of the hazards of having KC, I believe!
-
Sue Ingram
Dear Ziggy (1312) - Is that as in Stardust? I am suring you are always getting asked that one! Welcome to the KC Group Discussion Page. Just to let you know that I was diagnosed with KC when I was 15, however, probably had the condition for at least 2-3 years before that without realising it - I just moved further to the front of the classroom in order to see the blackboard!
That was over 25 years' ago now and in those days there was no KC Group (all thanks to Anne that we now have one). It was not until I had KC for at least 10 years that I went to the Group's first meeting and actually met someone else with KC. KC is definitely not your common or garden condition!
For over 20 years, I never really had any problems - KC did not affect my life at all; I just wore rgp corneal contact lenses and carried on completely as normal during my teenage years. I did not really know an awful lot about KC, other than my corneal was cone-shaped, my vision could only be corrected with contact lenses and I could not wear glasses. It has only been since the KC Group started that I have really learnt an awful lot more about KC and talking to other people with the condition really helps - at least you know you are not the only one then and it is only someone else with KC who can ever really understand.
I still wear contact lenses now but have the large scleral ones and also wear glasses with them just to bring my vision up; this has so far meant that I have not had to have a corneal transplant when my eyes decided they did not want to wear corneal lenses anymore after having done so for 20 years 24/7!
Originally, I was also the same as you and only had KC in one eye, although I was given lenses for both eyes. Eventually (years'later) KC also developed in my other eye, although this is not as bad by any means.
I should imagine that you should not have too many problems at this stage with your KC - hope you can wear your lens OK. You might find that it takes a bit of time to get used to it but once you have you will not even realise you are wearing one most of the time. It just takes a bit of peserverence.
Good luck and let us know if you have any more queries. Take care. SUE
That was over 25 years' ago now and in those days there was no KC Group (all thanks to Anne that we now have one). It was not until I had KC for at least 10 years that I went to the Group's first meeting and actually met someone else with KC. KC is definitely not your common or garden condition!
For over 20 years, I never really had any problems - KC did not affect my life at all; I just wore rgp corneal contact lenses and carried on completely as normal during my teenage years. I did not really know an awful lot about KC, other than my corneal was cone-shaped, my vision could only be corrected with contact lenses and I could not wear glasses. It has only been since the KC Group started that I have really learnt an awful lot more about KC and talking to other people with the condition really helps - at least you know you are not the only one then and it is only someone else with KC who can ever really understand.
I still wear contact lenses now but have the large scleral ones and also wear glasses with them just to bring my vision up; this has so far meant that I have not had to have a corneal transplant when my eyes decided they did not want to wear corneal lenses anymore after having done so for 20 years 24/7!
Originally, I was also the same as you and only had KC in one eye, although I was given lenses for both eyes. Eventually (years'later) KC also developed in my other eye, although this is not as bad by any means.
I should imagine that you should not have too many problems at this stage with your KC - hope you can wear your lens OK. You might find that it takes a bit of time to get used to it but once you have you will not even realise you are wearing one most of the time. It just takes a bit of peserverence.
Good luck and let us know if you have any more queries. Take care. SUE
-
Sue Ingram
Dear Harpo (1315), Sorry to hear that you are still suffering - I have heard that hydrops can take up to three months to clear. Glad that there has been some improvement for you - hopefully this will continue. We are all thinking about you and hoping that things will take a turn for the better very soon. Do take care and continue keeping us informed of your progress. SUE
-
Tony Stigle
Hydrops and keratoconus.
NEW NEW NEW! from Ken Pullum
on the Web site http://www.keratoconus-group.org.uk
Thank you. Ken.
NEW NEW NEW! from Ken Pullum
on the Web site http://www.keratoconus-group.org.uk
Thank you. Ken.
-
Sue Ingram
Thanks Ken for the info on hydrops - it really explains things for us.
So, Harpo, looks like although your hydrops is going to be a long and painful experience (and I know we are not going through it), the 'light at the end of the tunnel' is that your cornea might actually be less cone-shaped afterwards and also more tolerant of contact lenses. Looks like you will have to wait and see (excuse the pun!)
Good luck! SUE
So, Harpo, looks like although your hydrops is going to be a long and painful experience (and I know we are not going through it), the 'light at the end of the tunnel' is that your cornea might actually be less cone-shaped afterwards and also more tolerant of contact lenses. Looks like you will have to wait and see (excuse the pun!)
Good luck! SUE
-
Jon
Hi Dal
I have been treated on and off, (mostly on) for KC at the Western for 33 years. I left them about a year ago when service in their KC clinic hit an all time low (it has been declining for years). The trigger causing me to leave was their unwillingness to prescribe RoseK lenses, which give me better vision than other types, because of cost.
My advice - go private, but make sure you find someone who has much experience in fitting RGP lenses.
Jon
I have been treated on and off, (mostly on) for KC at the Western for 33 years. I left them about a year ago when service in their KC clinic hit an all time low (it has been declining for years). The trigger causing me to leave was their unwillingness to prescribe RoseK lenses, which give me better vision than other types, because of cost.
My advice - go private, but make sure you find someone who has much experience in fitting RGP lenses.
Jon
-
gemstone@umbilical.demon.
Dear Harpo,
> 7 weeks and 4 days now since I've had it
It *is* taking a long time. How maddening for you!
> no progress made until the last couple of weeks. A little
clearer on the edges, can just about make out how many fingers
on my hand if i place my hand above the right eye or to the far right.
Good. It sounds like the split has now healed so no more fluid
is coming through, and the fluid that did come through and
waterlog the cornea is now draining away. I found that mine
cleared at the edges first. It sounds like yours is now on the
way and should keep clearing gradually now. Hope the rest now
clears quickly for you.
> Had my appointment today. I was deperately seeking some form
of reassurance by the doc. She didn't seem like it was much of a deal and said that there was some improvement but it was a long process. See me in 6 Weeks!
Sounds like your doc knows a lot about eyes but not so much
about a good reassuring "bedside manner"?? Does she/the other
staff explain what is going on?
> 6 weeks? its like they want to send me away for long periods of time and hope something gets better. its like "this is ur
prob deal with it and come back later". I wished i could get one after 3 weeks or somethin. Maybe i want reassurance too much. So now in 6 weeks i am hopin for something further to happen a much more significant improvement.
To be fair to the doctor(s), there is not much they can do
until the white fog has cleared. Now it has started to clear, I expect you'll be able to tell how much it is clearing just as
well as they can.
For a hydrops to clear (AIUI), two things have to happen. One
is that the split in the membrane at the back of the cornea (the one that let the fluid through) has to heal over, so you again
have an unbroken membrane and no more fluid is escaping. The
other is that the fluid that came through the split and
waterlogged the cornea has to drain away and "dry out" - a bit
like the poor folks who had their houses flooded; once the river has gone down again, they have to wait for their houses to dry
out. Because only once the house is clean and drying out can
they really tell whether it will be OK, or whether they will
need to strip off the plaster that got soaked and re-plaster, or rewire all the electrics that were running round the house
behind the skirting boards, etc etc. Similarly with a hydrops - until it has healed, and cleared, and settled down at bit, they
won't be able to tell whether the split is healing over well or
is growing thick scar tissue and might need grafting, or whether it is all healing over very well and will be OK again, or
whether it has changed shape and will be OK but needs a new
contact lens ..... or what.
[I hope some of the experts lurking on this list will fill in
any more details here, or correct me if I'm wrong!!]
Believe me, though, I do know it's frustrating! - I've been
there.... though not quite as long as 7 weeks 4 days and still
thick....
> I am in the middle of my uni exams right now. Developing
hydrops over the last 2 months wasn't what i needed and put on a lot of emotional stress. Many have told me to apply for
extenuating circumstances but i decided that i do not want to.
Not sure why. Don't want to have examiners take pity on me or
something i guess. I think i want to do it "on my own" i guess.
That's your decision .... and yes, I do understand that. I
applied for "special circumstances" one year for my OU exams
(because I'd been ill and missed one of the assignments) and
didn't half feel silly, pathetic, embarrassed, you name it.
Hope the exams are going well and you gt the results you need.
Best of luck with the rest of them.
sorry for the long post just loads to get of my chest!
No problem! Please do keep us updated.
Rosemary
--
Rosemary F. Johnson
> 7 weeks and 4 days now since I've had it
It *is* taking a long time. How maddening for you!
> no progress made until the last couple of weeks. A little
clearer on the edges, can just about make out how many fingers
on my hand if i place my hand above the right eye or to the far right.
Good. It sounds like the split has now healed so no more fluid
is coming through, and the fluid that did come through and
waterlog the cornea is now draining away. I found that mine
cleared at the edges first. It sounds like yours is now on the
way and should keep clearing gradually now. Hope the rest now
clears quickly for you.
> Had my appointment today. I was deperately seeking some form
of reassurance by the doc. She didn't seem like it was much of a deal and said that there was some improvement but it was a long process. See me in 6 Weeks!
Sounds like your doc knows a lot about eyes but not so much
about a good reassuring "bedside manner"?? Does she/the other
staff explain what is going on?
> 6 weeks? its like they want to send me away for long periods of time and hope something gets better. its like "this is ur
prob deal with it and come back later". I wished i could get one after 3 weeks or somethin. Maybe i want reassurance too much. So now in 6 weeks i am hopin for something further to happen a much more significant improvement.
To be fair to the doctor(s), there is not much they can do
until the white fog has cleared. Now it has started to clear, I expect you'll be able to tell how much it is clearing just as
well as they can.
For a hydrops to clear (AIUI), two things have to happen. One
is that the split in the membrane at the back of the cornea (the one that let the fluid through) has to heal over, so you again
have an unbroken membrane and no more fluid is escaping. The
other is that the fluid that came through the split and
waterlogged the cornea has to drain away and "dry out" - a bit
like the poor folks who had their houses flooded; once the river has gone down again, they have to wait for their houses to dry
out. Because only once the house is clean and drying out can
they really tell whether it will be OK, or whether they will
need to strip off the plaster that got soaked and re-plaster, or rewire all the electrics that were running round the house
behind the skirting boards, etc etc. Similarly with a hydrops - until it has healed, and cleared, and settled down at bit, they
won't be able to tell whether the split is healing over well or
is growing thick scar tissue and might need grafting, or whether it is all healing over very well and will be OK again, or
whether it has changed shape and will be OK but needs a new
contact lens ..... or what.
[I hope some of the experts lurking on this list will fill in
any more details here, or correct me if I'm wrong!!]
Believe me, though, I do know it's frustrating! - I've been
there.... though not quite as long as 7 weeks 4 days and still
thick....
> I am in the middle of my uni exams right now. Developing
hydrops over the last 2 months wasn't what i needed and put on a lot of emotional stress. Many have told me to apply for
extenuating circumstances but i decided that i do not want to.
Not sure why. Don't want to have examiners take pity on me or
something i guess. I think i want to do it "on my own" i guess.
That's your decision .... and yes, I do understand that. I
applied for "special circumstances" one year for my OU exams
(because I'd been ill and missed one of the assignments) and
didn't half feel silly, pathetic, embarrassed, you name it.
Hope the exams are going well and you gt the results you need.
Best of luck with the rest of them.
sorry for the long post just loads to get of my chest!
No problem! Please do keep us updated.
Rosemary
--
Rosemary F. Johnson
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